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[Joanniebop]

Thanks MyssAnne..I think just knowing that he got the meds is soothing for his anxiety.

Have a great evening!

Joannie

[kitkatz]

It is NEVER a bother to any one of us to stop and answer a question in support of our family here on IHD.com. Think of us as your extended family.

[Joanniebop]

Thanks Kitkatz...

I needed that!

( the tears of chumminess are here again )

thanks

Joannie

[goofynina]

Hi Joannie, sorry for the late reply,  i do have a question though,  were you trained to use gloves?  My PD nurse told me that gloves carry germs too and we had to use the Hand wash method at all times, they also give us hand sanitizer to keep by our machine at all times.  Am i the only one they told that to?  ( i wouldnt be surprised)    Does he give himself Epo injections?  i see they didnt send you any syringes.   Is the patient tubing you mentioned more of an extension for the cassette to give him extra tubing to move further?   Other than that, it all looks good, hope your still having alarmless nights and i hope  Chuck is doing well with his new meds for his anxiety.  Godspeed my friends 

[Maggi]

  I am sorry about the capital letters. My grandson spilled something on the keyboard and the caps key got stuck. I am sorry if I upset anyone. As you can see I have hooked up a new keyboard.  It won't happen again.
  I hope the young man got the medical care he needed and is doing well.My prayers are with you all. Maggi

[melshell]

Hi and WELCOME Joannie!! I'm late to the thread, but was immediately transported back to when I first started PD as I read through it!! I can't believe they trained you guys on a cycler and didn't do any training on how to perform a manual!! I would definitely request manual training as a back up as soon as possible!! At one point I had gained 19lbs of fluid in a very short period that landed me in the E.R. with an elevated B/P, shortness of breath, and chest pain. I called my PD Nurse at the onset of symptoms and was instructed to go to the E.R. for labwork (It was a mess!! it was around midnight, I was connected and had to do an emergency disconnect, and I was terrified I was having a heart attack!) I had to follow up the next day at the center, and was instructed to do atleast one manual exchange (4.25) that day, two if I could squeeze them in, and resume the cycler as scheduled that night. I was trained to pay attention to how my b/p, weight, and UF "trended" as well as how I was feeling, and whether or not I appeared to be retaining fluid, especially in my lower extremities. Knowing what to do, when, will come with time-just be patient. But, as my PD Nurse says: some dialysis is better than no dialysis. The knowledge of how to perform a manual exchange and manual exchange supplies on hand when Chuck was experiencing difficulty would have been a great help to you both. I was trained on manual exchanges per protocol before I was ever introduced to the cycler, and sent home with manual supplies to practice with during training--sounds like somebody let you guys down. As someone else mentioned, there may be other times when manual exchanges are necessary as well, as in a black out, so it's important to get the training and have supplies on hand. I hope Chuck is doing better, and you guys are well! Keep in touch!

[Joanniebop]

Hi Melshell,

I asked  the PD nurse the other day if and when I would be trained to do a manual exchange and she said to me " why would you want to learn?" Not TO GET  HER PO'd , I mentioned the possibility of a black out and she said that most insurances won't pay for it ... duh  what??? Anyhow things are going very smoothly and we have an appointment next week at the center with the Dr. so I'll will bring it up to the DR. AND INSIST THAT I be trained. Thanks for your input and I'll keep you posted.

Goofynina, I was trained to wash, and not use my own cloth towels when drying , use paper towels , gloves, mask. I even ordered a hand paper towels dispenser. They gave me syringes at the center and trained me to give him his shot. I think that we do have extra long tubing on the patient line, but so far he has been OK ..I keep a commode next to the bed , which is working out well.

Three nights in a row.. no alarms...woooohooooo!!!!

Have a great night!

Joannie

[Wattle]

Hi Joannie, sorry for the late reply,  i do have a question though,  were you trained to use gloves?  My PD nurse told me that gloves carry germs too and we had to use the Hand wash method at all times, they also give us hand sanitizer to keep by our machine at all times.  Am i the only one they told that to?  ( i wouldnt be surprised)    Does he give himself Epo injections?  i see they didnt send you any syringes.   Is the patient tubing you mentioned more of an extension for the cassette to give him extra tubing to move further?   Other than that, it all looks good, hope your still having alarmless nights and i hope  Chuck is doing well with his new meds for his anxiety.  Godspeed my friends 

I was trained the same as Goofynina, without gloves. During each setup, manual and cycler, I wash my hands twice. Antibacterial soap first, lather lather lather rinse, dry with paper towel then use antiseptic hand rub. Such as Avagard or hexol. Active ingredient being Chlorhexidine Gluconate. I use the hand rub a few times during the connection and disconnection process.
I think this method is a lot easier than using gloves.

[Joanniebop]

Do I dare mention this to the PD nurse?
At the same time I request training for manual exchanges.
It certainly sounds a lot easier.

Does everyone change their dressing everyday.. I mean the whole routine, as I was taught..alchohol, iodine, anitibiotic cream and bandage?
Is this something that has to be done forever? I was also taught to wash hands, mask and gloves before changing the dressing/bandage.

How do you protect your cath area when showering/bathing?

Starting to feel more comfortable with the whole PD experience.

Thanks all.

Have A great night!

Joannie

[Kathleen]

Joannie

When hubby takes a shower he uses Saran Wrap on his cath. It seems to work for him. We was never train to use gloves, his pd nurse told us that they have germs and its best to wash hands real well. Hubby does manual, 4 times a day. (CAPD) It would seem to me, that they would want to train you to do manual as you said, just encase of power outage or if there is ever a time your hubby needs to do a exchange during the day. I was like you, what do we do if we have a power outage, how will I heat the bags up. As you get more comfortable with the routine, pd will be second nature to you, or it is to me anyways. There will be new things that might throw you for a loop. Never be concern about calling the pd nurse, thats what they are there for. Sounds like to me, you are doing a great job!!

When you ask about dressing do you mean for his exit site? If so, my hubby doesn't have to put a dressing on his anymore. His exit site has healed. But, thats what works for him. He does keep the cath taped.

Kat

[goofynina]

I no longer dress my exit site.  I havent for about the past 6 months.  I just tape it to my skin and go about my business and thank goodness all has been ok.   I had to, the tape was literally eating away at my skin. (ouch)  i wash it everyday in the shower and let it air dry when i get out.  But the one thing i DO NOT understand is why are you wearing gloves?  By the time your done with the hand wash technique, your hands should be sterile, touching the gloves just contaminates them.  I was told DO NOT use gloves. hmmmm, i just dont get it 

[Joanniebop]

I think that because I am doing it for Chuck the extra sterile precaution.  If he was able to do it himself then his own germs would not be as harmful as mine. Maybe?

Now I am a little confused.
Kathleen your husband wraps his cath in saran wrap and Goofynina you don't use any protection at all in the shower?

Maybe I am confusing the exit site and the cath?

And do I understand that you tape up the cath for personal comfort?
That's what I have been doing for Chuck, but he is getting sore also from the tape.

Sorry for all the questions but I really appreciate the input.

Thanks again.

Joannie

[Kathleen]

I think that because I am doing it for Chuck the extra sterile precaution.  If he was able to do it himself then his own germs would not be as harmful as mine. Maybe?

Now I am a little confused.
Kathleen your husband wraps his cath in saran wrap and Goofynina you don't use any protection at all in the shower?

Maybe I am confusing the exit site and the cath?

And do I understand that you tape up the cath for personal comfort?
That's what I have been doing for Chuck, but he is getting sore also from the tape.

Sorry for all the questions but I really appreciate the input.

Thanks again.

Joannie

Joannie

If you have questions always ask, someone around here usually can help. Hubby wraps his cath in saran wrap when he takes a shower, to help keep the water out. It works pretty well also. As for the exit site hubby doesn't put a dressing on it anymore. But, he always keeps cath. taped. So his exit site won't get pulled, and it has happen and made it a little sore. Hubby uses Nexcare paper tape for sensitive skin. There are times where his skin gets a little red and sore so he just try and tape the cath in a new spot.

As for the exit site in the shower hubby just try and not let it get too wet, but it does. He just let the exit site air dry, I don't think you're suppose to put dressing back on the exit site until it is dry.

Kat

[Chicken Little]

OK, it's almost funny how differently we are told to do things.   

I was told to wash my site in the shower every day with a sterile pad and soap and it was even fine to hold the hand held shower up to it to rinse.  Then I place a large sterile gauze pad over it, under my towel, to dry it off.  I dress it every day with Gentamycin and a small gauze pad taped with a even smaller amount of silk tape.  Then I hold it in place with a Patient's Pride Belt. 

I actually fold the belt over to remove my dressing and wear the folded belt in the shower to hold the tube in place, instead of taping it.  Then I just hand wash and line dry the belt after my shower and put on a new clean & dry one.

[anja]

When I shower, I use about an 8 inch length of the upper leg of pantyhose to slide up my leg above my knee and snug the end of my cath. in.  That takes the pressure of it hanging down and gets it out of the way to shower my waist area.   I was told to use the antibacterial soap after I got out of the shower, then dry and slip it in my homemade waist belt.  No tape involved in any way!   

[MiSSis]

I've revived this older thread because of a recent experience I had.  I've been on Cycler PD almost 4 years now (I'm on Fresenius) and this is the first time this has happened to me.  We live in Illinois and recently had a stretch of terrible weather, lots of rain and thunderstorms.  One night we lost power just as I was starting my 2nd fill.  The machine automatically went in to the power outage mode, shutting off the clamps that were allowing me to fill.  Anyway, the power was off long enough that the machine used up all it's auxiliary battery backup and shut down completely.  When that happened, I disconnected and went back to bed.  Our power wasn't restored until the next morning but when I went to start my machine back up, it wouldn't run.  I called Fresenius Support and was told the problem was the battery needed to recharge and that that could take as much as 12 hours before it would run properly again.  Since I'd missed the entire night of dialysis, I decided to do several manual exchanges throughout the day and then do my regular treatment that night.  Unfortunately when I went to check my supplies I found the tubing I had for manual exchanges was expired and I also didn't have quite enough 2L bags of dialysate to do all the exchanges.  I was able to contact my dialysis unit who luckily had enough stock of both the tubing and dialysate on hand and was able to pick up extra.  But it sure was a good lesson for me to learn.  Because of where I live and how prone we are to power outages, my PD nurse recommended I always keep enough tubing and dialysate on hand to perform at least 2 days of CAPD in addition to all the other supplies I order.  I just need to remember to check the expiration dates on these supplies in order to replenish them when necessary. 

Oh, and one more thing to mention; my PD nurse trains all patients on manual exchanges first just to get them used to the process and then proceeds to showing them how to use the cycler.  That way a patient is prepared to use whatever method is best for whatever situation might occur.

[angela515]

That's how I ordered my supplies as well... I always ordered some manuals each month just in case of that exact problem (or other problems). 

[Joanniebop]

Hi Everyone,

Been a long time since I posted but I am glad that Missis you revived this thread.
We still have not had the manual training and Chuck and I will be, hopefully, going on our first cruise since his PD in November.
Initially, I thought that Fesenius would deliver the machine and the supplies to the ship, as they did for our trip to Colorado, but I was informed that they do not allow patients to use the machine on ships and that we would have to do manuals.

Our PD nurse assured me that she would train us with manuals before the trip.
She explained to me that the reason we have not been trained , is because the medical center will not pay for both forms of treatment. It's either one or the other.

I want to practice a few times at home before we  get on the cruise and are out of the country, in case something goes wrong.

I have read on this board that some people retain a lot of the fluid when doing manuals, so I would not want to have any problems.

Have a great day!

Joannie

[Ohio Buckeye]

I'm surprised you did not have to learn manual before going on the cycler.
I had to in case of power outages, etc.
I haven't traveled for any long time with mine but like for overnight
just did manual.
If you are a fast transporter you will absorb fluid if you leave it in for a long
period of time.  I would absorb if I left it in overnight.  Did better doing exchanges
during the day and dry at night.  Now do exc. at night and dry during day.
When I abosrbed I had swelling and gained weight.

[MiSSis]

Hi Joannie,

I just totally confused by your PD nurse's statement.  I'd be inclined to maybe try and talk to someone in charge of the billing, just to ask them about how you're supposed to handle power outages and other situations that might require manual exchanges.  Obviously many of us here have mentioned that we have supplies on hand to cover either type of treatment so Medicare payment isn't a problem.  You might also explain to them that you're only doing one type of treatment at a time!  It isn't as if you're doing CAPD at the same time you're doing CCPD.  Someone who isn't a dialysis patient just might not be understanding the problem and just needs a "user" to explain the system to them.  Why is it that the person holding the cash is so far removed from the end product.  They probably have no concept what what the situation is.  

[Joanniebop]

Missis, I did bring up the power outage thing with them quite some time ago and they just kind of gave me a puzzled look and said that has not happened to anyone before and that I shouldn't worry. I am on some kind of preferred list with the electric company and we are supposed to be one of the first to have power restored. I asked specifically, what if he is in the middle of a fill, or a drain or even a dwell..could be a long time for the power to be restored. It was almost like we'll cross that bridge when we get to it.

Anyhow, we should get the manual training done soon.

I'll keep you posted.

[KT0930]

Why would you not be allowed to use the cycler on board the ship?? Manuals take up so much time during the day, you miss a lot more of your vacation and plus your connecting and disconnecting four times as much, so you have that much more chance of infection. I don't get it!

Are you going on a dialysis cruise, or a regular one?

[JerseyGirl]

I too am awfully confused about your PD nurse's statement.  I am a PD Home Training RN and ALWAYS train patients on manuals first, then the cycler.  As already said, you are not doing both at once, I don't understand the issue.  I train manuals for back up in case of an emergency power outage.  Plus I have found once patients are familiar with manuals they are not that frightened of switching to the cycler.  The concepts are better understood and the confidence is there.

[angela515]

When I was training for PD, I had no choice, you have to be trained on manuals before the cycler.

[Joanniebop]

I think that this medical center is working on some kind of grant and that was the reason why they were not allowed to train on manuals and the cycler. They were only permitted to use one method.

All I know is that we WILL get the manual training very soon, prior to our cruise.

As far as the cycler on the ship, Fresenius said that they will not send the machines to a cruise ship.
Someone on a cruise forum said that because of the sometimes unsteady seas, the machine would be alarming too often.
I don't know, maybe I should call Fresenius again and get an official explanation.

I'm kind of set now on the manual and have figured into our schedule, although I'd prefer the cycler.